My INR is too high !

[psychicnina]

Hi folks , a bit abt myself; I had a mitral valve replacement 5 year ago and my INR level is 3-3.5, which i have to say i can count on the one hand how many times its been on target ! I go for blood tests 2-3 times a week at the hospital as the nurses at my practise have been having problems getting blood due to my veins being fibrosed ! Since last sunday i have been having pain in my chest, fever, tight feeling (like someone is squeezing me ), anyway i was taken by ambulance to the hospital where they DIDNT do blood tests etc but they did send me home, next day i was getn my usual inr and it was 14.9, they gave me 2 caps of vit k and i have been every day sice , very tiring ! does anyone else have this problem ?? mine is either too high or 2 low, for most of last year its been between 0.9-2.1 and i take 10mg warfarin. regards nina x

[tassie]

I think fluctuating INRs are common amongst those of us with APLS.

You certainly did the right thing going to hospital when you were having pains like that. It is important that they check your INR whenever you go to ER so you may need to remind them and to ask them what the results are.

I find they often assume mine is too high if it is above 2.5 and I have to reassure them that anything below 3 is too low for me.

Just as well you had a normal test the following day and were given the vit K but the hospital should have picked that up.

[psychicnina in reply to tassie]

Thanx tassie x

[AvsG]

Oh dear! How awful for you. Have you thought of self testing? Since I started self testing my INR has been quite stable and within range. The highest it ever went was when I was being tested at clinic. I feel so much safer having control. My Coaguchek machine is calibrated with lab results at hospital and is very accurate. If you can get support and training to self test maybe it would help? I hope you don't have to go through this again and end up in hospital.

[psychicnina in reply to AvsG]

Hi , ive asked them if i can self test and i was told that i have to be stable for at least 6 months looks like thats not going to happen for me as its been 5 yrs x

[MaryF Administrator]

Hi there, as you well know this has to be kept an eye on, have you had a virus or anything different in your diet, or antibiotics? I know at times over the festive period other people have found at times that their INR misbehaves for a bit? Please do keep checking in with your clinic and your consultant until this calms down to where it should be. MaryF x

[psychicnina in reply to MaryF]

Hi Mary, i am very careful with my diet , i am on a long term anti-biotic i am going to ask if they will test me for APS as i dont ever remember being tested for this x

[MaryF Administrator in reply to psychicnina]

OK, good luck here are the tests which need doing, alongside a clear medical history: hughes-syndrome.org/about-h... Let us know how you get on MaryF x

[kateb81]

I am currently having very similar symptoms to you with the chest pain but I had my inr done on Thursday (after a 6 week break which is the longest I've ever had) and mine was too low. It was 1.8 and my range shoukd be the same as yours and just like you i can count one 1 hand how often it's on target (and I've been in warfarin since '99). It is so frustrating when you don't get consistent care from health professionals.. I have had many run ins in hospitals when people are lacking in knowledge on aps. You must fight for your own health hun and tell them if you don't think they've done something you would expect xxx hope you're feeling better very soon. Kate xxx

[psychicnina in reply to kateb81]

Hi Kate , thank you for replying to me , yes this is very frustrating , i am so fed up with the whole hospital carry on ! I am very determined to make a stand this time will keep you updated , x

[Manofmendip]

Hello Nina

Do you have APS (Hughes Syndrome)?

Dave

[psychicnina in reply to Manofmendip]

Hi Dave , to my knowledge ive never been tested for this , but i will ask them to test me on wednesday when i attened the hospital

Nina

[psychicnina]

INR today after NO WARFARIN FOR OVER 1 WEEK, 5.5 , back to hospital on wednesday, thank you all for your messages, i am happy to have found others with similar cases to myself , will keep u all updated x

nina

[Manofmendip in reply to psychicnina]

Hi Nina

If you are tested and diagnosed with APS then this is the right forum for you to be on. If you don't have APS then this forum is not the right one for you and you may need to find a forum for those who have had heart valve replacement.

Best regards.

Dave

[MaryF Administrator in reply to psychicnina]

I agree with my fellow ADMIN Dave on this, this forum helps and support people with Hughes Syndrome/APS, it may be that you do have this, please let us know any results of test you have, however if not so, we are the wrong one, best of luck with your new tests. MaryF x

[Lure2]

Regardless If you have APS or not APS you must do something about your INR-values. Selftesting is good, CONSISTENCY in what you eat (medicin, food etc) is important (make notes) and try to learn everything about how your body reacts on warfarin which I think you must stay on for a while after a mitralwalve replacement.

Good luck from Kerstin in Stockholm

[Jules-194]

Maybe it's something your eating too much of.

[Holley]

I had my mitral valve replaced in 2006 with a mechanical valve. My target INR is 2.5-3.5. I was extremely difficult to regulate when I was with my first hematologist. I yo-yoed constantly. I switched to a new doc and have been in my target range more often. I've been more consistent on name brand Coumadin (11mg) than generic. This doc also manages things through diet more often (little high? have a big spinach salad and re-test in a few days). The old doc was constantly tweaking my dose and testing too frequently. I tried home testing. It didn't work. We did samples at the same time I was at the lab to compare. Do you have the anticardiolipin antibodies? The reagent used by the home machine did not give me accurate results so I sent the machine back. We had to call the company to find out which reagent they used. Be patient. It took me years to sort of stabilize and be in the zone.

[Holley in reply to Holley]

Forgot to address the tightness in chest, I can't vouch for the fever but I've had the tightness and was diagnosed with costochondritis. It's an inflammation in the tissues in your chest. I essentially was so stressed I sprained my chest.